Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, August 27, 2011

The Good, the bad and the ugly: Hospitalization

This post is going to be more detailed than you probably really care about, but it  must be written out somewhere so I remember when I see  my surgeons for follow-up.

The good:

After surgery my time in recovery was short.  They brought my mother back to tell me what the doctor had said and let me eat ice chips and got my pain controlled.  I asked before I left if I'd be able to get more morphine immediately upon going upstairs.  They said I would.  Lesson learned:  Always ask for more pain meds before transfer.   The other really great thing was Dr. Brain came to see me after she finished work, and hung out and visited for quite a while.  I love Dr. Brain.  She'd spent the whole day checking my chart to see how I was throughout the day.  And she came in with the good news that I can be less strict with my diet based on a conversation with the primary tester/developer (?) of the drug.  Which is exciting.  She also promised to email Dr. Mind so he would know I was ok.  She was just so nice to take time to do that after all the time she'd already had to put into this surgery.

The Bad:
 I  waited an hour and a half upstairs for meds, long enough my mother went in search of a nurse to tell her I was in serious pain and needed meds.  They still delayed, something about orders, but the recovery nurse had told me it was all in order.  This nurse was over-busy and not helpful with anything, ever, either day, except that when Dr. Brain came to visit and I had an attending physician chatting with me like a friend she suddenly was very busy and "helpful".  She got my catheter to be less painful for a few minutes and then that was it, her entire contribution to my stay, except for trying to impress Dr. Brain.   However, a later nurse decided my catheter pain was because that nurse had done something wrong and her attempt at fixing it caused everything to flow back into my bladder.  So then a 3rd nurse spent 30 minutes getting it functional again, then a few hours later I was back  to bladder spasms and the feeling I desperately needed to pee but couldn't.  Removal of the stupid thing a few hours later was  followed by lots of peeing on my part.  I had a full bladder when it came out, just like I'd been saying for hours.  There were 2 other bad things and those were just typical hospital stuff too (I've spent years giving cavalier responses to catheter pain as I was taught.  Never, ever again).  The first was that it was impossible to sleep.  Partly this was because of care being done; I was on vitals every 2 hours, the IV had to be monitored, changed, and the settings altered, my catheter bag needed to be emptied, etc.  The resident finally got around to coming to see me at 1 AM and woke up from one of my only periods of sleep for this.  I was beside the nurses' station and they were loud; I was also beside the ice machine and it was loud.  Someone down the hall had a toddler visiting after 10 pm and the toddler was having temper tantrums, as well he/she should.  I can't even remember what all was going on except that I got no sleep (and the key reason for that is in the ugly.)  So the next morning when she said I could go home I was absolutely thrilled except that I was a little anxious because the patient handouts say that you will be discharged by 11 AM on discharge day and that if you don't have a ride you'll wait in a sort of holding area. Given sitting isn't high on my list right now my mother really scarmbled to be there by 11.  I was there until almost 7 so she spent a whole day bored since I didn't have much she was interested in doing with me and had to buy 2 meals of icky fast food etc.  The worst part/almost ugly was waking at 4 needing pain meds and not having anything I could take until 6.  After laparoscopy you normally go through periods of having serious gas pains because they inflate your belly with gas that they can't totally get out in surgery. The pain can move around and hurt in the shoulders and back.  I've found this pretty manageable; it was my catheter that made my pain during the period of waiting and waiting for meds and then waiting and waiting for them to do something go up to 9-10/10.  It was the worst pain I have ever felt in my life.  I'm not sure why I wasn't given orders to have morphine on the floor if I needed it but I wasn't (this is something I'm anxious to talk to my doctor about) and because they weren't coming in and assessing pain as often as they should have nor pursuing more meds when I was not able to have anything, I had a very hard few hours.  However to be fair just like all pain I am not good at communicating severity.  I did not aggressively pursue relief or even ask if they could get something to help.  I did talk to them about bladder pain relief and then nobody wanted to really try it because of my other meds so they pulled the catheter instead and that did work.  However, nobody should have to go through 4 hours of that much pain.

All in all though, the bad was not that bad.  Much of it can be countered; my room was loud because of the  nurses' station and at times other people's visitors but it was a private room as all the rooms on my unit were.  Some of the pain, etc. was worse because I did not seek help because I hated having to use the call light for everything.  I kept hearing memories of nursing home complaints of "she's always on the call light" combined with complaints of the nurses about how demanding room 13 was being (it was a post-op floor, demanding seems relatively fair although I know from experience how bad some people can be) and so it was hard for me to push the call light for every need during the 20 hours or so I was on bedrest.  I kept trying to get them to make parts of it easier, like giving me a lot of fluids since I knew I would drink a ton.  I was not restricted at all and yet they kept giving me one, maybe 2, 16 oz. cups that I'd finish in 30 minutes or so then want more.  I kept explaining, even Dr. Brain explained, that I must drink a lot, but they didn't seem to understand MUST and A LOT.

The Ugly:
There were 2 things that were really bad, things that I have complaints filed about because, well, you'll see.

First, my meds.  My meds are scheduled as follows:  Bedtime: 600 mg Seroquel XR, 1 1/2 tabs of lithium CR (there are 3 versions of lithium, one works better for me than others but the dose is the important part and there's now way to achieve that dose without using the version I take), 2 1 mg klonopin pills, 1 singulair tablet,  vitamin D, laxative, and normally a vitamin that was on hold during surgery.  I have various meds as needed, including 5 mg of valium.  In the morning I take 1 nexium, 2 tabs of a drug called amiloride for diabetes insipidus (makes me pee constantly and without the med all my electrolytes flush out of my system.  It's a rare condition and rare treatment b/c usually if you get it from lithium as I have they take you off lithium but for me that wasn't an option); thyroid medication; laxative.

So they came and told me that they didn't have the extended release forms of seroquel and a med that I didn't need to take while inpatient anyway.  I told them regular seroquel would be fine.  So eventually they brought in my evening meds.  300 mg of Serqouel, singulair, 1 tablet of lithium, type unspecified but didn't look like the type I take and couldn't have been the right dose, valium in an unspecified dose that I think was 1 mg because the whole poing of my 5 mg tablets is they completely knock me out when I can't sleep, which is the reason I agreed to take the valium, I figured the help with sleep would be good, vitamin D and my laxative.  I was too tired and medicated to think hard and object strenuously and demand the psych team come in which I should have done.  The end result of this was that I wasn't sufficiently sedated to sleep and I got to have symptoms of klonopin withdrawl the next day.

It was also bad in the morning as I was not given Nexium (important because of GERD which makes my asthma worse along with being on meds that upset the tummy anyway) but I was given (and refused) more Seroquel (I don't take that in the morning since it makes me sleepy.  Plus, if I normally take 600 mg at bedtime why would you try to give me 325 mg divided and call that the same?  They also tried to get me to take singulair again, even though it is a once daily med. I refused that.  The nurse made some funny statement about maybe they were changing it to a morning med.  Um, no.  I don't need my gyn. residents changing my asthma meds.  Or my psych meds, but I figure Dr. Brain has adequately taken care of that by now and that resident is probably dead.   And, to top it all off, I can't prove it but I think someone finally managed to screw up my diabetes insipidus medicine with a strong blood pressure med that sounds very similar (I've gotten this from the pharmacy twice but caught the error.  This time I think I took it).  Why do I think this?  Because I was on IV fluids for 36 hours or so and drank a ton and was in pain which should have made my blood pressure go up.  At one point that day it was 88/44, I was dizzy even when sitting in bed, and it didn't come up to anything reasonable again that I am aware of.  I always have low blood pressure, but 88/44 is extremely low and it should have been up; the highest I saw was while I was in super pain that morning and before I took AM meds it was 126/70 or something; that was from pain.

So my meds were frighteningly screwed up.  That 1 AM resident said he'd reviewed my psych meds and they seemed fine so he is my suspect.  I think he is also the one who fought with nursing about my d/c papers that he didn't complete correctly, resulting in my long stay on Wednesday.  However, my mother pointed out they may have been watching my blood pressure and not telling me.  I think I am going to request those records; maybe I can see what happened.

I do find it ironic that I went in there so afraid of med errors and the ones that were dangerous were covered but nearly every other med was screwed up.

Ugly #2 has already had a complaint filed by the ombudsman.  As I said we waited 7 hours after the alleged deadline and nearly 11 hours post my being told I was going home to be discharged with very vague reasons being given.  If they had just said "we're monitoring you blood pressure" "your doctor wants you to be here 24 hours post-op", etc. then that would have been fine, but what I was told was something about a resident doing something wrong.  They were so anxious to shove me out the door that transport was called and waiting before my IVs were out or I had a shirt on.  My IVs were kind of a mess; it appears one failed in surgery and was rapidly replaced with a 2nd attempt blowing the vein and the third attempt being very quickly placed.  This resulted in a ton of tape and pieces that were hanging down catching on things.  Removing it was a mess and I actually helped.  This was partially because the person removing it was a nurse's aide and I don't think they're allowed to do this.  She was nice but not trained with needles.  So finally we got me so I wasn't bleeding from the Ivs and had clothes on.  The transport guy took me down to the proper place, and asked what my mother was driving.  I told him, at least twice.  When he noticed that someone beside us was having trouble being put in her vehicle because of 2 broken legs he wandered over to help her transporter.  This is fine, but he forgot me.  They talked for a good 15 minutes about how to help her and most of that time my mother was sitting right there with him facing her.  I kept waiting, good girl that I am, (And also because I knew that the wheelchair was not safe for me to get out of and that with my weak, sore abdominals  I wasn't easily going to fix that).  But when they loaded the other person and he walked away I lost it.  I got up and climbed out of the wheelchair (which hurt like crazy given where my surgery was) and went to my mother's care, sobbing hysterically.  He did notice this and asked "so you found your mother"which made me more angry and I cried even harder.  A nearby volunteer wanted to know if I was ok and I'm sure heard most of the story as I cried to my mother, who hadn't been able to see me.

So I left, and that night I reported the medication ugly to Dr. Brain and the next day I filed a complaint with the ombudsman regarding the transporter who abandoned me and then forgot about me.

It wasn't all bad. The most important parts went really well.  It could have been better in spots.  A lot of that was my being too out of it to fight about my pm meds.  I should have.  I just was so out of it.  Overall though I've survived surgery and survived some tough things afterward and now I just have to keep healing.


Anonymous said...

I appreciate all the news, Jen. Dr. Brain is incredible, isn't she? It's too bad that she can't control everything...like the medication errors. Amazing craziness. It seems that your mom was very attentive and helpful..glad to hear that. I'm also happy that you were able to say it's over, important stuff has gone very well and your focus now is on healing.

Please be careful about over-doing it. Tell the kitty not to spill, o.k.?

Cheering from the sidelines, Michal

Anonymous said...

Stop complaining and get a life. Laparascopic surgery barely counts as surgery. The reason nurses didn't bring you pain meds every two seconds is because you are just a hypochondriac and probably drove them and everyone else crazy.

Anonymous said...

Anonymous #2 is the one that needs to get a life. What possesses someone to speak anonymously on someone's blog and call names.

Enlightened medical practice treats pain as the fifth vital sign and treats pain as it is, not as the medical professional perceives it should be.

God forbid that Mr/Ms "get a life" is a medical professional. I would not want to be the care of someone like that.

Rachael said...

Such courage there, Anonymous, leaving harsh words and NO NAME. It's not as if you leave your name, address, phone and email. Just a first name, a simple thing. But you don't have the nerve. Just the nerve to send your zinger and rush off. If you feel that negative, go elsewhere.

Anonymous said...

Wow! Rude and crude Anonymous is the one who needs to get a life! Why are you here making disparaging and hurtful comments? Go away. Remember "if you can't say anything nice, don't say anything at all?" My experience in years past with 3 c-sections, peritonitis and numerous bladder infections make me compassionate not judgmental. What's wrong with you?

2 Corinthians 1:3-4 (NIV)

Praise to the God of All Comfort

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.


Cranky Amy said...

Hola, Chica.

About the only thing I can say about your good, bad, ugly stuff is that the few times I've had to stay overnight, they NEVER get you discharged when they say they will. It's ALWAYS hours later. It always seems to be "Discharge time is X am", and then you actually get out of there somewhere around x+8 to 10 hours later.

Also, I kind of wish hospitals/inpatient services were run more like, I don't know, maybe hotels, where customer service is more prevalent. Then maybe they would pay more attention to the patients and some of the support staff wouldn't feel like they were working in a sweat shop.